Making your voices count: navigating the COVID-19 vaccine programme

31st March 2021 // Laura Kerby

As the four nations each move towards a relaxation of social distancing measures, it’s easy to think that the toughest of our challenges are behind us.

But for myeloma patients, as well as their families and carers, there are still unanswered questions about the level of ongoing risk they face from COVID-19, the protection they can expect from the vaccine, and the choices they may have to make in the coming months.

Myeloma UK is committed to providing evidence-based and accurate information to patients as well as acting on behalf of the myeloma community where we feel data (or lack of data) leaves patients in a difficult and anxious position.

That is why we have continued to work to ensure that the voices of myeloma patients are heard in government and within the JCVI.

At the start of this year, we were concerned about the changes to the phasing of the second dose of the Pfizer-BioNTech vaccine for myeloma patients. We were aware that the British Society of Haematologists had expressed similar concerns in writing to the JCVI, and we led colleagues to ensure a draft letter on behalf of the Blood Cancer Alliance in support of the BSH and opposing the change to a longer interval between doses was received by the JCVI.

We followed this up in March, asking for an urgent review of the evidence presented in the study on vaccine efficacy in cancer patients produced by Kings College London and the Crick Institute. We felt this gave further weight to our call on a shorter time between vaccine does for myeloma patients so, with the Blood Cancer Alliance, we called for a second look at reducing the time between doses for immune-compromised blood cancer patients, as well as government funding for further evidence on vaccine efficacy at first and second dose for all COVID-19 vaccines in the longer term. We followed this letter up with a request to the Health Secretary, Matt Hancock, pressing for a meeting to discuss these important points.

To ensure that myeloma patients were properly recognised and represented in any future vaccine research, we also joined the Blood Cancer Vaccine Taskforce. This group of experts from the UK, USA and Australia are looking at identifying and addressing potential gaps in COVID-19 vaccine research for patients with blood cancer. We are delighted that one of Myeloma UK’s Trustees, Dr Karthik Ramasamy, is at the centre of the project, conducting a dedicated study in vaccine effectiveness in myeloma patients.

We’ve also been pleased to add our name and support to the One Cancer Voice nine step plan to clear the cancer backlog and invest in world-leading cancer services. Protecting and improving cancer services for myeloma patients is essential as we start to come out of the pandemic.

Throughout all of this, we’ve stuck to our belief that actions speak louder than words and our first actions at Myeloma UK are always to support the myeloma community.

It’s important that you – our patients, families and carers –are confident that we have checked and verified every piece of information we offer, be it through our COVID-19 Hub or the ‘Behind the Headlines’ blog series.

And whilst we will always work with partners when we believe we will achieve more through acting collaboratively, we will always call for the needs of myeloma patients to be recognised in that work.

I am acutely aware of your concerns which we receive daily through our Infoline, Ask the Nurse service and social media channels. There are too many unknowns about COVID-19, the vaccine and how myeloma patients will respond, as well as uncertainties about what this means for your risk and protection as shielding ends. We are determined to be right by your side and will work relentlessly to ensure your voices continue to be heard by decision makers.